$6,532 of $18,000
73 donations

This fundraiser ended on 09/30/12

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The Hilderbrand family needs help raising funds for medical expenses, equipment and non-traditional therapy not covered by insurance.

Our son Liam was born with a rare genetic disorder called PEHO syndrome (Progressive encephalopathy with Edema, Hypsarrhythmia and Optical atrophy). Since 1993, roughly 50 children in the world have been diagnosed with this condition. The disorder consists of visual loss (CVI), Infantile Spasms (seizures), Microcephaly (lack of brain development and growth), hypotonia (low muscle tone), poor feeding and much more.

At just 18 months old Liam had endured weekly doctor visits since birth, been observed by 14 medical specialist, had 6 EEG’s and a MRI, a nerve conduction study, a muscle and nerve biopsy and several other procedures and genetic testing. He has had countless trips to the ER, 8 hospital admissions and 6 surgeries including a feeding tube placement just before his 1st birthday.

Now at 27 months old, we are preparing him for yet another surgery—one to help Liam breathe while he sleeps. In early May he will have his adenoids and tonsils removed, a procedure we have been waiting for since July of 2011.

Liam currently takes daily, 12 medications and vitamins to help with seizure control and acid reflux (GERD). He sleeps with oxygen when he naps and all night because of his severe sleep apnea and very low muscle tone. Liam is unable to hold up his head or sit up on his own. Developmentally he is the equivalent of a 3 month old.

In a ‘good week’ Liam will have 4-5 seizures/clusters (75-100 seizures in each cluster). He is nonverbal, though can make sounds and blow bubbles at will. Liam is globally developmentally delayed in all areas.

We are asking for support —from our family, friends and our community to help with medical expenses, equipment and non-traditional therapies not covered by insurance.To date, insurance has paid to modify a chair for home and has purchased a well needed wheelchair—for proper head and truck support. But recently we have been receiving denial letters in the mail —for one reason or another—stating the refusal of payment for equipment that Liam desperately needs. Liam deserves every opportunity available to grow and develop to his ability. To do that we need your help.
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